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Six in 10 patients prescribed proton therapy for cancer treatment are denied coverage by their insurer. (Chiaki Kawajiri/KHN)

Of all the uncertainty, fear and frustration following a cancer diagnosis, there’s perhaps nothing more disheartening for cancer patients than finding themselves on the losing end of a power struggle with an insurance company.

When physician-prescribed care is denied by insurers, cancer patients and their families write letters, appeal denials and spend countless hours on the phone. They exert their energies fighting not cancer but a broken insurance system that seems to hope they’ll simply give up.

It’s a far too common scenario these days. Insurance companies are unfairly and arbitrarily “rubber-stamping” denials for coverage without truly examining each individual patient’s case. A report our organization just released shows that cancer patients whose doctors recommend proton therapy are denied more than 6 times out of 10.

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Even more egregious is the fact that subsequent appeals can drag on for weeks or even months, and denials are often made by a person with little or no knowledge of the specific diagnosis or treatment, and with seemingly no regard for the patient’s well-being or physician’s recommendation. And in the end, only 4 out of 10 cancer patients will get the proton treatment their doctor recommended.

Treatment denial is not only frustrating to patients; it is callous and harmful. When proton therapy—a highly targeted radiation therapy used to treat certain types of cancer in delicate locations—is denied, patients are forced to make incredibly difficult decisions. They can delay treatment while appealing a denial, figure out how to finance their care out-of-pocket, or forgo proton therapy for an alternative, less-precise treatment that could seriously compromise their quality of life.

Despite being an FDA-cleared treatment that is covered by Medicare and often approved for pediatric patients, health insurers continue to delay and deny proton radiation treatment with impunity for patients aged 18-64, endangering the lives of patients who don’t have time on their side.

The broken state of access to cancer care is described by patients as “maddening,” and their oncologists call it “senseless” and “heartbreaking.” And it epitomizes exactly how cancer patients in our country shouldn’t be treated.

But patients are starting to speak out and demand change. As a case in point, our report features the story of Linda, a patient diagnosed with a granular cell tumor. Linda was initially denied and entered into a frustrating, confusing and unfairly long appeals process before her insurer was finally forced to pay for her treatment by an external review board.

Derek, a 34-year-old NASA engineer from Texas, was diagnosed with oligodendroglioma, a type of brain tumor. His insurer denied his claim for proton therapy not once but twice. Only after his mother and sister contacted the media about his insurance denials did his insurer reopen his case and approve treatment.

In both cases, denial letters Linda and Derek received were riddled with factual errors about their diagnoses and the desired treatment.

Vivian, a lung cancer patient, paid more than $100,000 out of pocket after her insurance company refused to cover her proton therapy and she exhausted all appeals options. Mike’s story is perhaps the most frustrating. As a patient with throat cancer, proton therapy offered the best chance to maintain normal swallowing, eating and thyroid function. Denied once after insurers called proton therapy “experimental,” he appealed to no avail. With the clock ticking and his cancer growing, Mike gave up and went with the insurance-approved treatment and today suffers from a host of avoidable side effects.

Linda, Derek, Vivian and Mike are just four of many cancer patients, family members and allies who are taking the fight for a fair, timely insurance process public, demanding that the balance of power and medical decision-making be shifted back toward patients and their physicians. They are all part of Cancer Care Denied, a campaign calling for decision-makers—including state insurance commissioners and companies with self-funded group health plans—to fix the broken process by adopting and enforcing principles of a Cancer Patients’ Timely Treatment Bill of Rights.

The Bill of Rights calls for fair access to doctor-recommended treatment, transparent and timely decision-making based on accurate and up-to-date clinical criteria, and execution of meaningful enforcement mechanisms—including automatic approvals for missed deadlines and meaningful fines for insurers’ repeated failure to provide fair, appropriate treatment approvals.

Cancer is a formidable foe, and patients certainly don’t need insurance companies placing additional obstacles in their paths. State insurance commissioners and companies with self-funded plans have the ability and the responsibility to hold insurance providers accountable and shift the balance of power so that defeating cancer is the only battle patients need to wage.